Questions to Ponder as a Caregiver or a Concerned Loved One. How important is it that healthcare workers (nurses, therapists, technicians, physicians, others) change their behaviors to sustain, achieve, and restore our loved ones’ abilities to walk and to be mobile in their environments?
Let me ask you to pause a moment. Think of a time when either you or a loved one was in the hospital and for whatever reason was mobility-impaired.
- How and when did you notice the mobility problem?
- How did that make you feel about you/your loved one?
- What did mobility problems mean to you/your loved one?
- How did safety concerns enter into your thinking?
- What did you communicate to others about your observations?
- How did the actions of nurses, physicians, therapists and other hospital workers contribute to impaired mobility?
- How did nurses, physicians, therapists and other hospital workers promote safe mobility?
- What did you want the health care team to do?
- Did you ever tell anyone your mobility story?
Personal stories have the power to help us to understand your own and others’ experiences, behaviors, beliefs and attitudes in new ways, in ways we might not have thought about before. Stories help us to connect with others to thrive in our lives. I read once that the most effective way to begin a presentation is to start with a story. Stories have the power to “suck the audience in.” I told my mobility story, below, to open a professional conference about mobility. I did so with trepidation because my story was highly personal; it evoked a lot of emotion in me. I barely got through the story without breaking down in tears. Then I delivered my address about why safe mobility care is not a standard of care when it is so important. Countless conference attendees approached me to tell me how powerful my story was and how sorry they were for my loss and for the substandard care my husband received. I was stunned. Hopefully my story put a showdown/hue/color to what I was going to say next about mobility. I also hope that my story put a face to their clinical encounters and made clinicians want to be better clinicians and equipment representatives want to more in tune with their customers.
In my decades of nursing experience, I have learned that virtually everybody has a mobility story that shaped one’s thinking in one way or another. Often the story is about a loved one’s experience while hospitalized. Too often these stories are about loved ones being restrained, kept in bed, and not being allowed to walk even though they are able and there is no medical reason to prohibit walking. Walking and mobility are basic human functions that allow us to interact with the world and people around us, and in doing so learn about ourselves. When bed rest is promoted, patients are at risk of all sorts of complications such as blood clots, pneumonia, deconditioning and falls. When assistance with mobility is not done correctly, nurses, therapists and others are at risk for sustaining a potentially career-ending injury, usually a back injury.
My Story. My story is about my dear late husband, Terry. He was the love of my life, and we had an amazing life filled with family, friends, humor, food, music, outdoor activities and many other shared passions. Terry and I were married for 31 years and raised two wonderful men.
When Terry was hospitalized in 2017, he had been living with Parkinson’s Disease for five years. His PD was aggressive. He went from fully functional to taking PD meds every three hours while awake to keep from “freezing.” When his meds were “off” (e.g., meds not working) he experienced significant anxiety and all-body pain, but especially around his chest. He said that it felt like steel bands were compressing his chest. His executive functioning declined over time with worsening physical and emotional symptoms. He could not retrieve information, which frustrated him, and he had vivid hallucinated of animals and people. Despite the progressing symptoms Terry was very determined to live with PD; over the years he did many things to preserve his mobility. When walking on the treadmill became difficult, he took a “Big and Loud” class and regularly performed the prescribed exercises. When his meds were “on” (e.g., working) Terry was often puttering around the house, cooking, or tinkering with something. I never really asked him, but I think that he knew that as long as he could move, he was alive.
Sometime early in 2017 a radiologist noted a lesion on the right middle lobe of his lung. After two unsuccessful bronchoscopies Terry was referred to a thoracic surgeon. The surgeon explained to us that without a thoracotomy there was no way to know exactly what the lesion was, but that surgery carried risks. Terry made the decision to have the surgery. (Note: Later I felt very guilty for encouraging him to have the surgery. Another common grief emotion. Maybe I’ll write about caregiver guilt soon.)
In mid-August, Terry was admitted to the hospital. A lot happened during the hospitalization, but I will focus on the mobility care he received. Many wonderful, smart and caring nurses, surgeon, physicians, therapists and others took wonderful care of Terry in the hospital and I will be forever grateful for that, but mobility care lacked.
After surgery when I first saw him in the intensive care unit, he was awake but groggy. I really don’t remember much about that evening or night. He was stable but had oxygen, an arterial line, an IV, an NG, a Foley catheter, and a chest tube connected to a suction device. When he was able, I encouraged him to do in-bed range of motion (ROM) exercises with his arms and legs. After that he then did ROM on his own, but I never saw anyone else asking him to do them, and I was by his side almost 24/7. The day after surgery the lift team was called and they got him up in the bedside chair, tubes and all. Over the next two days a physical therapist helped Terry to progress to walking in the hall with minimal assistance. Mobility-wise, Terry did great!
Terry was transferred to a room on a general medical/surgical floor. Shortly after the transfer he asked the nurse if he could get up in the chair. This is roughly how the conversation went.
RN: I can’t get you up until Physical Therapy [PT] evaluates you.
Me: Just this morning in the ICU, Terry was walking in the hallway with minimal assistance.
RN: I am sorry, that is the policy.
Me: But it is late in the afternoon, and PT probably won’t get here until tomorrow, if we’re lucky. Would you assess him and make a judgment about his getting out of bed? (EDITORIAL COMMENT: RNs have the knowledge and skills to do a physical assessment to assess function and risk.)
RN: I am sorry, a PT evaluation before my getting your husband out of bed is hospital policy. [pause] I know! I will call the lift team to get him out of bed.
A few minutes later two young men from the lift team came into the room. They introduced themselves, performed a mobility assessment and determined that Terry was able to get out of bed to a bedside chair with minimal assistance. No telling how long Terry would have been in bed if I had not pushed the issue. I was very grateful to the lift team, and disappointed in the RN.
Me: Thank you so much! I appreciate your help. [Turning to the RN and showing no mercy] Wow, look at that! An unlicensed staff performed an assessment and supervised Terry getting into the chair.
Unfortunately, the story doesn’t end here. A few days later Terry was transferred to the rehabilitation unit. Terry and I were thrilled because rehab was a significant step forward in getting him back at home where he belonged. The transfer to rehab happened at the end of day shift. Around 4 pm the nurse came into Terry’s room to complete the admissions intake. A few minutes into the interview, the following discussion ensued.
Terry: I have to use the restroom.
RN: Oh, I’ll get you a urinal.
Terry: I’d like to get up and use the bathroom. That is what I’ve been doing.
Me: Yes, he has been progressed from bedrest in intensive care to walking in the hallways with his walker while he was on the med/surg floor.
RN: I’m sorry, but PT has to evaluate him before I can get him up—hospital policy.
I thought my head was going to pop right off my neck! I could not believe what I was hearing, on a rehab unit, no less, where I would expect nurses to be proficient in mobility care. The nurse did not let Terry get out of bed, so we just waiting until the nurse left the room. Then I helped Terry get out of the bed and into the bathroom.
In talking to many nurses in the field who work in all kinds of settings I know that my story is not unique. All around the country people receive substandard mobility care. This is not right, and it is not healthy.
Call to Action. Now you’ve heard my story and learned how I became passionate about mobility. I challenge you to tell your story to one person who works in healthcare in the next 5 days. After you have that conversation, please post what you learned about mobility from telling your story. How could you become more assertive in making sure your loved ones receive evidence-based mobility care?